Special Report: Dementia often leaves patients and families at a loss

Clark Galloway can be a bit of a ham when company shows up to The Atrium.

He smiled, raised his arms and shook his hands as if to say “ta-da” when his wife of nearly 52 years, Kay, and son, Guy, visited two weeks ago.

The 76-year-old former stockbroker nodded his head as Kay talked about how they met, and he even corrected her when she talked about his military experience.

But Clark doesn’t say much. A stroke two years ago and another stroke-like incident last year left him with trouble walking, and his wife and son worked as his caregivers for more than a year.

Those roles grew increasingly difficult as his Alzheimer’s disease progressed, and Kay and Guy became like thousands of other family members left to navigate what to do next. Families who can afford to are turning more to facilities that offer specific memory care and dementia programs, boosting demand. The Alzheimer’s Association estimates a person develops the disease every 68 seconds.

“I had no knowledge of this facility before this,” Guy said. “When Mom and I were looking, we really didn’t know where to go.”

The cost of care

The conversation about moving a loved one to a nursing home or memory care facility doesn’t usually include if, but when.

One in three seniors dies with Alzheimer’s or another type of dementia, according to the Alzheimer’s Association Greater Illinois Chapter. Alzheimer’s is also the only cause of death in the U.S. top 10 without any measures tied to preventing, curing or slowing its progression.

The time to make that move differs for each family, said Richard Apple, a licensed clinical social worker and senior manager of care navigation with the Alzheimer’s Association office in Rockford.. The timing depends on the support system available to the family and on their finances.

In-home and long-term care aren’t typically covered by insurance unless the family has purchased long-term care insurance. In-home care can run $100,000 a year, and facilities can range from $4,000 to $8,000 a month. Some federal financial assistance does exist for people who can meet income guidelines and for veterans.

“It’s one of those things that unless we figure out a better way to do this, it’s going to start really creating some financial difficulties,” Apple said. “Most people when they make first contact really have no idea. They’ve had insurance all of their life. Most people think it’s covered by insurance, and it’s a matter of educating them that this is how things work.

“Unfortunately, we get a whole lot of calls when it’s late in the game, and it’s a crisis.”

The association’s goal is to get families involved with support services — such as actual support groups, links to local health care agencies and educational resources to better understand dementia — when their loved ones are first diagnosed with dementia.

“If people get in early and get support, their adjustment and ability to really manage challenges of this disease is greatly increased and the cost burden of the health care is significantly decreased,” Apple said.

Life at The Atrium

Clark was referred to The Atrium last December.

The facility, 2885 McFarland Road, has a 40-patient capacity. The Atrium had 37 patients as of last week, but that number can fluctuate.

In March, the facility underwent a renovation that included implementing the Montessori-based dementia program.

Montessori’s key elements focus on individualized programming, promoting independence and personality, and sensory stimulation. It also requires continuous education for staff members and residents’ family members and friends.

The Atrium has two wings, one for higher-functioning residents and one for those with lower cognitive function. Separating those populations is another facet of the Montessori program — it’s important not to remind people how much cognitive function they’ve lost or will lose.

Residents stay on average about two years and one month. On Veterans Day, hospice workers cared for a man who was dying.

The sounds of Michael Buble crooning old standards played through ceiling speakers like holiday tunes in a department store. There’s a Rockford Peaches mural signed by a former player on one wall, and baskets are labeled — per Montessori standards — with activities.

A box with a jigsaw puzzle has a sign that reads “Sort edge pieces. Connect edge pieces. Place middle pieces to create a picture.”

Texaco, Sinclair and Pennzoil gas and oil signs hang on a wall outside Clark’s room. Shannon Harris, The Atrium’s executive director, said he inspired the decorating motif when the facility was being renovated.

A resident who goes by the nickname Cookie — her husband asked that her last name not be used — kissed community relations director Debi Sanchez on the cheek as she headed toward the door that separates the wings. An alarm sounded when she pushed on the door, but she just turned around and started walking the other way.

Harris redirected her to a table for lunch by telling her she had something to show her.

Past the dining room in the back wing are stations where residents can perform everyday tasks that seem mundane but help stimulate memory. There’s a place to fold laundry, a spot to change a baby doll’s diapers and clothes, and a sandbox with plastic shovels, rakes and shiny coins.

Dishes in the dining room don’t match — they’re red, blue, yellow, green and purple to contrast with the food being served so residents can see the food better. Harris said residents have more interest in eating and have gained weight since the change.

Behavioral health

Bernie Marinelli started Anam Care, an assisted-living facility for dementia patients, in 2006. She’s a nurse with a background in hospice and behavioral health, and she grew up in southwest Rockford.

Anam Care, at 8104 Sayer Road near Tebala Shrine Center and Montessori Private Academy, has 24 beds and specializes in treating various types of dementia. Staff members receive psychiatric care training, and the facility is often a last resort for people forced to leave other facilities because of aggression and other behavioral issues.

Marinelli also created Satori Pathway LLC, the nonprofit arm of Anam Care, in 2006. It’s a consulting component focused on geropyschology — psychological services for older adults — that helps families with facility placement, and that doesn’t mean just sending them to Anam Care..

People who qualify to stay at Anam Care must be more functional — able to feed, dress and clothe themselves — based on its assisted-living designation. Some residents die there but others are transferred to a skilled-nursing facility as their health declines.

Marinelli said 90 percent of Anam’s work is behavioral management intervention. That work involves interacting with residents and not stifling certain behaviors.

She said lamps and pictures move frequently because residents like to rearrange them. She recalled Christmastime shortly after Anam opened — she had a room there because she was working as a nurse in the suburbs — and seeing different residents wearing her Christmas sweater, pants and sparkly top.

Her checkbook went missing for weeks, and after a female resident passed away, they found the checkbook stored under the woman’s mattress.

“As long as they don’t hurt themselves and they don’t hurt anybody else, they can move the furniture all day long. It doesn’t matter to us,” Marinelli said.

Instrumental music from composer Robert Farnon streamed from the easy-listening station cued up in Anam’s living room area with couches and chairs. There’s a tiki bar in a sitting lounge near the back patio where vegetables are grown for meals at the facility.

The lounges were empty during lunchtime, when residents — some sitting in their own chairs and others in wheelchairs — ate at tables in the dining room.

Denny Reigart rounded the corner in his wheelchair, a Green Bay Packers balloon floating behind him. He’s more of a Chicago Bears fan, so Marinelli said the balloon must have been a light-hearted gift from a staff member.

Reigart is 60, his memory impairment the result of a stroke. He worked as a Crystal Lake police officer and realizes that he’s younger than most of the other people at Anam Care.

He’s been at Anam for three years. Marinelli said he likes to sit in on important meetings, like the construction discussions for the recent expansion.

Reigart can easily carry a conversation, but his face twists every few minutes, making him look like he’s about to cry. But he doesn’t cry. That’s the dementia manifesting itself.

A growing need

Anam is in growth mode. Marinelli and her team recently converted the old carpenter’s training facility across the short drive from Anam Care into a new home that will serve 16 more residents and will house Satori’s offices. Anam has a waiting list of five people that officials will work from to fill those new rooms.

The new location is called Anam Glen and will have expanded community services for families living with dementia. Initial assessments will be free. It will have some day care hours, a cafe and a community room that will offer exercise classes and other activities.

It will have a “boutique” medical practice with a physician and a nurse practitioner to assess people for geropsychiatric needs.

“We’re not trying to be everything to everybody, but because we have a specialty in behavioral health training, we are vital to a very direct group of people,” Marinelli said.

Longtime Rockford retirement community Wesley Willows started its dementia care program, called Kirk’s Place, in 2006. It’s licensed for 30 patients — 20 residential and 10 day program spots. There’s a waiting list for the day program and sometimes for the rooms.

Kirk’s Place grew out of an Alzheimer’s activity center/day program first developed in 1996. Campus director Debra Adkins and activity director Kathy Ryks said they have frequent conversations about how to meet the growing need for dementia care.

More than 600 people live at Wesley Willows in independent, assisted-living and nursing home settings. Adkins said officials have developed some small dementia care programs across the continuum of care.

Betty Gumbrell’s parents moved to Wesley Willows in the mid-1990s, first to one of the independent-living homes. Her father, Dr. Charles Gray, died in 2006. After that, her mother, Mary Lou, moved to an apartment, then to assisted-living and then to Kirk’s Place.

Gumbrell lives in St. Paul, Minn., but visited her mom every month or two. Mary Lou died last October, and Gumbrell praised her parents’ forethought in moving to Wesley Willows.

“That was a real blessing for us because when they were in their mid-70s or so, they were the ones deciding where to go,” Gumbrell said. “They could have their own home and be in a place for continuous care.

“They were already there, and there was no waiting list. Mom could move from stage to stage with people who knew her, knew her before she started to decline and she was acquainted with them. ... That made a big difference for her experience.”